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Living with a Vestibular Disorder

WE UNDERSTAND

Living with a vestibular disorder can affect a person's life in many ways.

The vestibular system is central to a person’s core functioning. A damaged or diseased vestibular system, therefore, affects not only how you feel, but how you are able to perform day-to-day activities.

With or without a diagnosis, a dizzy person can be overwhelmed and confused. Many people need guidance about how to self-educate and how to help family members and friends understand their experience and the daily challenges they face.

The following pages provide answers to some of the common questions asked by people living with a chronic vestibular disorder, as well as strategies, tips, and links to additional information.

Tips to help you cope with everyday challenges

Whether your symptoms came on gradually or all at once, you've had to adjust to the challenges of everyday living with a vestibular disorder. You're not alone! Many people have contacted VEDA asking for help dealing with routine tasks - such as shopping - as well as special situations - like visiting the dentist. Following are some tips for coping with the most common issues that arise for people with vestibular disorders. If you have a question that is not answered here, please feel free to contact us directly.

Attending Events

A person with a vestibular disorder is easily fatigued when sorting out vision and balance signals in expansive areas - even those that are quiet and calm. This effort becomes daunting in noisy and busy environments such as in large “box” stores, at crowded sporting events, in theaters, or even while navigating city sidewalks with other pedestrians. Such conditions make it difficult for a person to rely on visual clues about balance and movement because everything is moving, lighting isn't ideal, and stable anchors such as walls are far away.

This affects the quality of a person's social, work, and family relationships because it forces you to make unsatisfactory choices. For example, you may need to choose between attending your child's soccer game and fixing dinner for the family after the game, because standing on the sidelines watching the team run back and forth is so overwhelming that you "rise to the occasion" during the game, but collapse as soon as it is over. You don't want to disappoint your child by not appearing at his game, and at the same time, you need to reserve enough energy to feed him at the end of the day and catch up with the rest of the family.

Here are a few tips to help you attend events in challenging environments:

Use a cane to provide you with additional proprioceptive (touch) information about where you exist in space.

Pack a fold-up stool or canvas chair in the trunk of your car to use when needed at outdoor events.

If you are at a sporting event, sit at one end of the field/coliseum rather than on the sidelines. This will help you avoid turning your head back and forth as the team travels up and down the field. Instead, you'll be keeping your head steady while watching the team run to or away from you.

Travel Strategies

Travel conditions that may be problematic for a person with a vestibular disorder include those that involve exposure to rapid altitude or pressure changes, certain motion patterns, or disturbing lighting. Travel decisions that accommodate a person’s disorder will depend on the diagnosis, the method of transportation (e.g., train, boat, airplane, automobile), and the conditions and planned activities at the destination. VEDA receives many questions such as these: “Will travel increase symptoms?” “Should I avoid travel?” “What is the best form of travel?” “What can I do to minimize discomfort while traveling?”

For strategies and tips, read our free publication Travel and Vestibular Disorders. This includes an explanation of specific problems that people with a vestibular disorder might experience during travel such as middle ear problems due to rapid pressure/elevation changes, problems adjusting to certain motion patterns, and sensitivity to visual and sound disturbances. It also offers helpful strategies to consider in planning a trip, and precautions to take while traveling, such as:

Do not fly on an airplane if your sinuses or ears are infected or blocked due to illness.

Avoid reading or working on a computer while you are a passenger in a moving vehicle, such as a car, bus or train.

Tips for Dining Out

Crowded and busy social settings such as restaurants may be very difficult to navigate if you have a chronic vestibular disorder. By making some adaptations, you may still be able to meet friends and eat in relative comfort. However, even with the best planning, you may become dizzy or disoriented. It will be easier on you and your dining companions if you explain your problem and suggest ways you can be helped before you actually need assistance. Here are some tips to get you started:

Dietary Choices

Many people with certain types of vestibular disorders (e.g., Meniere’s disease, secondary endolymphatic hydrops, or migraine-associated dizziness) find that certain dietary modifications can help manage their disorder. Depending on your particular diagnosis, you may want to:

Distribute food and fluid intake evenly throughout the day and from day to day.

Tips for Increasing Activity Level & Managing Fatigue

According to psychologist, Dr. Rachel Bilgrei, cognitive (and physical) energy is finite for everyone. If you are using a great deal of this energy to maintain equilibrium and stay steady (something that is normally done automatically), it is unlikely that you will have very much left over for other activities. As a result, fatigue sets in. Activities that you used to be able to perform with ease and very little effort now require much more effort, leaving you drained of energy. Click here to read a short publication by Claire Haddad, long-time VEDA Support Group leader, with tips on how to increase your activity level and manage fatigue.

Coping Tips for Students

Discuss your situation with your professors and a school guidance counselor so they are aware of your health issues. Some schools have help for students with visual or hearing challenges. Reduce your class load if you are able - until your symptoms are improved. One student bought noise-cancelling headphones so her concentration while studying improved. Others go to a "quiet study area" such as a library to reduce distractions. You may need to experiment with different sitting positions as well, such as changing the height of your desk, getting a more supportive desk chair, and/or changing the computer monitor so there is less flickering. There are full-spectrum, non-flicker desk lights that can help improve concentration. Don't give up hope - you may need to change your school schedule, but many have continued with their education and successfully graduated! (Return to the top of the page)

Adjusting to vision problems

A common complaint for people with vestibular disorders is that they have difficulty with their vision. They may be sensitive to bright lights or even daylight. They have problems focusing on an object or perceive that objects are moving from side to side or revolving around them, or they may see their visual field jiggle or bounce. They may even have difficulty getting “the right” glasses prescription.

Glasses and contact lenses: With glasses, the type of vision correction alters the size of the visual world, growing larger for farsighted people and shrinking for nearsighted people. This change forces the brain to recalculate the ratio between head and eye movement, which is a fairly simple adjustment to make with lenses that have only one optical power. If a person needs correction for both distance and reading, using bifocals, trifocals, or progressive lenses will create extra work for a brain already overtaxed by negotiating a vestibular disorder because multiple levels of magnification in the same lens require the brain to calculate and adjust to multiple eye-head movement ratios. Such a person may want to consider having two pairs of single-vision glasses—one for each task. Regardless, even with a single power lens, adjustment will be more difficult if the glasses are not fit properly such that they tend to slide down the nose and cause the distance between the eye and the lens to vary.

A person with a vestibular disorder who wears glasses may also consider switching to lenses with a small lens diameter to reduce visual aberrations, thus helping to reduce vertigo and dizziness. Another possibly helpful alternative is switching from glasses to contact lenses. Unlike glasses, where the distance between the eye and the lens can vary, contacts are worn directly on the cornea of the eye, allowing objects to appear without distortion and in the correct size and position. In some cases, contact lenses may also help dampen the nystagmus associated with a vestibular disorder. However, a disadvantage of contact lenses is that they can increase a person’s sensitivity to light.

Tolerating visually problematic environments: When outside, wearing high quality sunglasses can help a person tolerate glare from sunshine. To minimize visual distractions in their peripheral vision, some people find it helpful to use glacier glasses (sunglasses with side visors). Other adaptations may include fixing attention on a large object a short distance away while walking toward it, using a cane to increase touch cues, and ensuring that home or office lighting is consistent from room to room and doesn’t use unshielded bulbs or fluorescent lights. If fluorescent lighting is unavoidable at work, using a small incandescent desk light may help disguise some of the fluorescent light’s flickering.

Home décor can be modified to eliminate patterns wherever possible. This might include replacing wallpaper that has a busy pattern, substituting light-filtering curtains for mini-blinds, and replacing or removing highly patterned carpets, which can trick the eye into believing that there is a depression or elevation in the floor where none exists.

Some digital televisions and computer monitors can exaggerate visual sensitivity from a vestibular disorder. See information about choosing monitors and televisions, and viewing 3-D television and films with a vestibular disorder by reading VEDA’s free publication Computer Monitors and Digital Televisions.

Visiting the dentist

Dental work can often be uncomfortable for a person with a vestibular disorder because of the intense lighting, extended amount of time requiring an open mouth, and adjusting to a reclined chair position. Sometimes people with vestibular disorders perceive that a dentist chair has been reclined beyond horizontal, even if it has not. Also, some people find it uncomfortable to be in the chair as it is lowered and raised. Finally, after the procedure, some people with balance disorders find that any residual numbness from the local anesthesia is a bit disorienting.

To help with the lighting, wear dark sunglasses during the procedure.

To help with discomfort associated with the chair position changes, inform the dentist about your situation and then ask if:

The chair back can be lowered while you remain in an upright seated position, and then you will lie down on it. Similarly, before the chair back is raised up from a reclining position, request a warning so that you can sit up on your own, prior to the chair being slowly raised.

Any time there is a break in when your mouth is being worked on, request that you be allowed to sit up—however briefly. This often helps a person maintain orientation.

Ask the dentist to lower the chair only as low as possible. Obviously you would want the dentist to have the optimum positioning of your mouth in order to do his/her best work, but sometimes the degree to which they lower the chair is automatic, and this default position is not vital for them to be effective and comfortable working in a person’s mouth.

You might set up a hand signal to inform the technician if you need a break. Anesthesia at the dentist’s office: In addition, have your doctor coordinate with your dentist about precautions the dentist needs to consider if he/she is administering anesthesia during a procedure.

Stay active!

Many people find that staying active – to the extent that is comfortable for you – can help control or even reduce the symptoms of a vestibular disorder. Always consult with your doctor before beginning a new activity, and introduce new activities slowly so your body has time to adjust to them. If you begin to feel dizzy or disoriented, stop immediately and consult a physician.

Here are some tools and exercises that have been found to be helpful for some people with vestibular disorders.

Using the Wii for Vestibular Rehabilitation - This very brief article describes the emerging use of the Nintendo Wii and WiiFit video game console for vestibular therapy, including details on specific games used and resulting improvements to patient balance.

Improving Balance with Tai Chi – This article explains the basic principles and balance benefits of Tai Chi, including direct clinical observation of its efficacy as a complementary vestibular therapy and consumer tips on selecting and preparing for a Tai Chi course.

Thanks to VEDA, vestibular disorders are becoming recognized for their impacts on people's lives and our economy. We see new diagnostic tools and research studies, more accessible treatments, and a growing respect for how life-changing vestibular disorders can be.

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